- It is important for family members and health care providers to know what kind of medical care a patient wants at the end of life. Advance directives, which include living wills and medical powers of attorney, are legal documents that record the patient’s wishes for end-of-life care.
- Advance directives should be filled out while people are healthy, because doing so gives them time to think about the end-of-life care they would choose if they were unable to communicate their own wishes. It also allows time to discuss these wishes with loved ones.
- The laws regarding advance directives vary from state to state, so it is important to complete and sign advance directives for the state where the patient lives or expects to receive medical treatment. The resources described in Question 10 can provide information and guidance.
What are advance directives?
Advance directives are legal documents that allow people to communicate their decisions about medical care to family, friends, and health care professionals in the event that they are unable to make those decisions themselves—for example, due to being unconscious or in a coma. The two main types of advance directives are a living will and a medical power of attorney.
What is a living will?
In a living will, people indicate what kind of medical care, especially life-sustaining care, they would or would not like to receive if they become unable to speak for themselves. The most common types of care that are addressed in a living will include:
- The use of life-sustaining equipment (such as dialysis machines, ventilators, and respirators)
- “Do not resuscitate” (DNR) orders; that is, instructions not to use cardiopulmonary resuscitation (CPR) if breathing or heartbeat stops
- Artificial hydration and nutrition (tube feeding)
- Withholding food and fluids
- Organ and tissue donation
What is a medical power of attorney?*
A medical power of attorney is the advance directive that allows people to name another person to make decisions about their medical care if they are temporarily or permanently unable to communicate or make these decisions for themselves. (This document can also be known as a “health care proxy,” “appointment of health care agent,” or “durable power of attorney for health care.”) The scope of a medical power of attorney is not limited to choices at the end of life but also includes decisions in other medical situations. Generally, with a medical power of attorney, people appoint someone they know well and trust to carry out their wishes. This person may also be known as a health care agent, surrogate, attorney-in-fact, or health care proxy. The document goes into effect when a doctor declares that a person is unable to make his or her own medical decisions.
*Adapted with permission from Understanding Advance Directives. National Hospice and Palliative Care Organization.
Why are advance directives important?
People have the right to make decisions about their own treatment. Filling out advance directives gives them a way to do so. Choices about end-of-life care can be difficult to make even when people are healthy, but if they are already seriously ill such decisions can seem overwhelming. Some cancer patients want to try every drug or treatment in the hope that something will be effective. Others will choose to stop anticancer therapy. Although patients may turn to family and friends for advice, ultimately it is the patient’s decision.
It’s important to keep in mind that when patients choose not to receive or to stop treatment to control the disease, medical care to promote their well-being (palliative care) continues. This type of care includes treatment to manage pain and other physical symptoms, as well as support for the psychosocial and spiritual needs of patients and their families.
When should people complete advance directives?
Many people associate advance directives with decisions made near the end of life. Yet, ideally, these documents should be completed while a person is healthy. People don’t need to wait until they have been diagnosed with a serious illness to think through their wishes for care. In fact, making these choices when people are well can reduce the burden on them and their loved ones later on. Earlier communication ensures that patients with cancer or another serious disease will face the end of their lives with dignity and with treatment that reflects the values by which they have lived.
As people prepare their advance directives, they should talk about their decisions with family members and loved ones and explain the reasons behind their choices. Although having this conversation may not be easy, it’s important for everyone to know what kind of care the patient wants. If it’s too hard to have this talk, it may be helpful to plan a family meeting and invite a social worker or member of the faith community to help guide the discussion.
What are the next steps after advance directives have been completed? Where should advance directives be stored?
A member of a patient’s health care team or another professional should review the documents to make sure they’re filled out correctly. Most states require that signing of the documents be witnessed. Patients should make copies of the documents and put the originals in a safe but easily accessible place. They should give copies to their doctor, hospital, and family members. People may also want to keep in their wallet a card with a written statement declaring that they have a living will and medical power of attorney and describing where the documents can be found. Some organizations will store advance directives and make them available on the patient’s behalf. Contact the National Hospice and Palliative Care Organization for more information about companies that provide this service (see Question 10).
Can people change their advance directives?
Yes. The process of discussing and writing advance directives should be ongoing, rather than taking place just once. This way a person can review the documents from time to time and modify them if his or her situation or wishes change. Even after advance directives have been signed, patients can change their minds at any time. To update their documents, patients should talk to their health care providers and loved ones about the new decisions they would like to make. When new advance directives have been signed, the old ones should be destroyed.
Do the legal requirements for advance directives vary from state to state?
Yes. Each state has its own laws regarding advance directives. Therefore, special care should be taken to follow the laws of the state where the patient lives or is being treated. It’s possible that a living will or medical power of attorney signed in one state may not be recognized in another. State-specific advance directives can be downloaded from the National Hospice and Palliative Care Organization (see Question 10).
What can caregivers do if advance directives cannot be found and patients can’t communicate their wishes?
If decisions about care haven’t been discussed between the patient and caregivers in advance, caregivers may feel anxious as they struggle to make these choices for their loved one. It’s common for conflicts to develop between family members who have differing opinions. Caregivers may find the following tips helpful:
- Hold a family meeting to talk about the options. Ask the health care team to suggest an expert to guide the discussion.
- Ask the health care team to explain the goals of the medical procedures that are being offered. For example, are the procedures meant to stop the cancer? Lessen pain? Keep the patient alive, and if so, for how long? Caregivers need to know why certain options for care are being offered.
- Think about what the patient would want. Caregivers can imagine what their loved one would say if they could speak at that moment. Did the patient say something in the past that would help with the decision-making process now?
Where can people get help filling out advance directives?
The organizations listed below can help people complete their advance directives. A doctor or nurse, hospital administrator, or social worker may be able to provide assistance as well. Also, although people don’t need to hire a lawyer when they want to complete advance directives, a lawyer can explain terms and procedures.
Aging with Dignity, a national nonprofit organization, worked with the American Bar Association’s Commission on Law and Aging to develop an easy-to-read living will called Five Wishes that is legal in 42 states and the District of Columbia. Five Wishes is available in 26 languages, including Spanish and Braille. The organization has also created an advance care planning guide for adolescents and young adults called Voicing My Choices. Both resources can be accessed online or ordered in hard copy format.
The Cancer Legal Resource Center (CLRC) is a joint program of the Disability Rights Legal Center and Loyola Law School, Los Angeles. The CLRC provides free information and resources on cancer-related legal issues to people with cancer, survivors, caregivers, employers, health care professionals, and others coping with cancer. The CLRC has a national toll-free line where callers can receive information about relevant laws and resources for their particular situation. A volunteer panel of attorneys and other professionals provides more in-depth information and counsel to CLRC callers. The CLRC provides services in Spanish and has bilingual staff that can assist people on the toll-free line. Some publications are also available in Spanish.
The National Hospice and Palliative Care Organization (NHPCO) represents programs and professionals that provide hospice and palliative care in the United States. Caring Connections is a national consumer and community engagement program of NHPCO that works to improve care at the end of life. Caring Connections provides a toll-free number, website, and a wide range of free materials about end-of-life care (such as hospice and palliative care information, advance care planning, and caregiving). Caring Connections provides free advance directives with instructions for each state. Some Spanish-language publications are available, and staff can answer calls in Spanish.